Hi all. Just thought i'd mention something today after having a conversation with someone at work.We were talking in general as you do. I mentioned getting a snood,a snood in the uk is a scarf /hood but can go over the head,but theres not 2 separate ends.Anyway i said i was starting to feel that 'dread' of the colder months,bearing in mind,all my work friends have at some point seen me in real distress over pain. His reply was 10% is physical and the other 90 is is the mind.I thought you really havent got a clue,and so it tells me that unless you have suffered this awful pain,then you really havent got a clue. It kind of woke me up to people still being very ignorant.
I feel your pain. A "dear friend" I have attended church functions with asked me if my pain could be psychological. So I knew the ladies I am in group meetings with, etc. were saying this about me. I had sensed the majority did not understand. I have stopped going to the ladies meeting. Six months after this the lady had carotid artery surgery. It went wrong and she is left with nerve damage of the trigeminal nerve. She now has shocks. My husband wanted me to ask her if it could be psychological. Of course, I would not do that. I am very sympathetic when she calls. My feelings were very hurt over this and I thought I had developed tough skin.
Don’t you just hate it when you run into someone who’s as dumb as a bag of nails, possesses no empathy and makes you feel more frustrated than you already do. So sorry you encountered this. But unfortunately it won’t stop, which is why we have each other. I have lots of hats and scarves. I have even thought of producing my own line of masks and hats. There are some days I really want to put on a mask. Hopefully, after the MVD I can stick to hats and scarves. Best wishes.
That comment comes across as judgmental to me. As if to blame the sufferer, if only they had better control over their thinking the pain would diminish.
It's interesting you mentioned the woman's carotid artery surgery. Sometime in the beginning of my pain which was during a period of great stress I went to a chiropractor whose therapy included deeply pressing along my carotid artery. I started passing out on my couch when I would get home. After a few sessions I quit and found my cardiologist who said to never allow anyone to press on my carotid (I should have known but was desperate at the time). He also ran a battery of tests, one of which was an ultrasound of my neck. It turns out I have a crooked carotid artery. I have always wondered if that was done in the chiropractor's office.
These types of encounters are always hurtful. Ignorance is different that maliciousness. Our job as TNers is to educate folks. I had no idea about Tn prior to my own diagnosis and may have also suggested a pyschological aspect. I hope not, but I can not say that with complete certainity. I do know that I am now much more sympathetic to the suffering of others; real or imagined. Stay strongs friends. You are all good people.
Unless one of my work mates 'knows' someone in their outside world who has this issue,then we will always come across the ignorant,but it just raises the eyebrows that there really isnt much sympathy for an invisible illness / inconvenience
Patty said:
These types of encounters are always hurtful. Ignorance is different that maliciousness. Our job as TNers is to educate folks. I had no idea about Tn prior to my own diagnosis and may have also suggested a pyschological aspect. I hope not, but I can not say that with complete certainity. I do know that I am now much more sympathetic to the suffering of others; real or imagined. Stay strongs friends. You are all good people.
Good day to all. My favorite is how r you ? As if we have a cold and took some pills, and r all better now. My response is I’m not sick. It’s a disease and for this moment I ok. Thanks for asking! Sometimes it’s all I can do is to scream, but I know it would hurt!
Thanks to all on this site,I know I would be in a sad place if not for all of u!
It may be helpful to explain to them, that whilst its easy for folk to assume the condition is psychological, its actually physiological disorder - caused by nerve damage, and as such can be extremely painful and unpredictable and doesn't necessarily "get better" the way a cold or infection does. Neurological not neurotic - quite easy for folk to confuse the two if they don't know much about anatomy. Maybe offer, If they're interested in learning more maybe offer to provide some further literature. Some of the links on this site can be quite good. Even Wiki has a pretty good definition. Hope this helps, keep smiling :)
hi smiley. I dont really bother trying to explain,we all more or less know that in our outside world,people dont really care unless they are true friends or your partner. i will let them get on with their ignorance. I think it is sad when you realise that some people you are around,really dont give a damn.I have been in quite a bit of pain this week,one night my face hurt so much,it woke me up,and i couldnt sleep well after that,so have been a little grouchy. Heres to a pain free week.....postive thoughts
Hi Barbara. I totally understand what you mean. I was first diagnosed last year and I was off of work for like three months trying to get some control over the pain. When I came back to work, some people thought my face was going to look different for some reason so there was this whispering of what my face would look like, etc. A woman who I used to work with had TN but she actually had cysts removed which completely helped her said to another woman I worked with, who was sort of minimizing the whole TN issue that there is a reason they called it the suicide disease, which was great because it fixed her ignorance right up. So I say, the next time someone thinks it’s all in your mind, let them know what they used to call this illness and trigeminal neuralgia is the nice name for it!
I know what you mean about the cold and wind and I am not looking forward to it either 
on tyhe subject of cold winds i saw a kid yesterdaY wearing a hoodie that when you put up the hood and do up the zip it goes right up the middle of your face to the top of the hood with two mesh circles where your eyes are and it was fleece lined unfortunately kid didnt know where mum got it....keep your eyes peeled there out there
Oh I like that hoodie. Will keep an eye out thanks. Oh there was a really neat card to hand out when I was having a bad day. I printed it off this web site. A ton of them, cut them folded them and put them in my purse during the winter season. I believe a very nice fellow gentleman sufferer created them. They were perfect Check around on the site. Good luck.